Wednesday, June 24, 2009

Monday morning, as Angelique opened the blinds to the back patio, we noticed our rose bushes were in some serious need of clipping. Normally, that falls under a mildly annoying, but necessary chore, but when we looked out at the patio...it just seemed like a jungle. We are regaining our functionality around the house - albeit slowly - but this one still eluded us. She said, "The roses really need trimming. [sigh]." To which I said, "Maybe we can have someone trim them for us!" I was thinking of all the wonderful people that live near us that have been looking for ways to help out. However, there was also this small feeling of shame - like I should be able to handle such a basic task. Angelique replied with, "Okay, WHO?" My first thought went to my minister Dennis, who helped me with my roses before Ali was born; showing me how to trim them and how to put manure on the soil in the winter. Then I thought, "How am I gonna get Dennis to come up here to do that?" He lives and works 30 minutes away and again, I felt ashamed to call and ask. My shoulders slumped, and I answered back to Ang, "I dunno." and that was that.

Or so I thought.

Later that morning, who calls? Dennis.

He says he's bringing food to the house from folks from church. Later that afternoon, he arrives with his wife Linda, and Linda immediately tends to Angelique and Bella as Dennis walks straight to the patio door. He says, "Those roses need trimming. Want me to trim them for you?" Then he says, "I already trimmed mine and my neighbor's this morning!"

As I get Bella's wound care supplies ready for her dressing change, Dennis goes to work on the roses. Linda remarked to Angelique while watching him out there," Oh, he's in his element now!"

God doesn't just send someone over who knows roses, but DELIGHTS in caring for them...and not just his own, but those around him he cares for.

That's how good God is! All the time!

Thank you God. Thank you Dennis.

Okay, onto today...

Our home health nurse, Kelly, visited today during dressing change for Bella's first weekly check-up. It is really great having someone come to the house every week to assess her condition. We know that NOTHING will EVER get out of hand with such vigilant care and oversight.

Anyhow, it's been a week since Kelly has seen Bella. She couldn't believe her eyes. She said she thought she was looking at a different baby; Bella had improved that much since she last saw her. She couldn't believe how good her skin looked and how fast her wounds had healed. She was also thrilled to hear that Bella was a big fat 9 pounds at the Doctor's office yesterday!

It was so great to hear, because while we know she's getting a little better every day, we see her every day, so to have that someone who has tracked her progress step away and come back...well it's like when your aunt or uncle says, "I can't believe how much you've grown!" Remember that?

So, 3 for 3 with recent medical assessments. There are NO blisters in Bella's mouth anymore, and only one small one on her lip yesterday which mostly cleared up today. Every wound on her body is now healing well, and that left foot...the tough one...is almost closed! God willing, by this time next week, there will be NO OPEN WOUNDS ON OUR DAUGHTER!!! That will be a first since she was born exactly 4 weeks ago today. What a journey those 4 weeks have been. They feel like 4 months to me. Bella just keeps getting better, and better, and better. You know what? One day, Bella's gonna look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

Awesome.

You know what else? You were there. You were there through it all. You saw it all unfold, and you willed/prayed/CAUSED it all to go this way. Our communion of intent has been seen and heard by God and the Universe, and they have listened! I use that language to honor all the belief systems at work here. No matter what language we use, I believe that we have summoned a power greater than our own to our aid in this time of crisis. Call it what you want, but make sure you THANK IT because IT WORKED.

Love and Gratitude.

The two most beautiful states to be in. Our love and gratitude extends to you all for your inspirational support of our family. You are noticed, you are loved, and you are appreciated.

Like Judith and Sara, I am shedding tears of joy as I read this good news!Keep on, keeping on.Love to all,MomPosted Jun 25, 2009 8:07amby Trazona Montague

I am so excited about the progress that not only little Bella is making, but you and Ang as well. I said it before and I will say it again. You guys are so strong and brave and your faith and love just transcends and flows right through Bella. I will continue to keep you in my prayers.

TrazonaPosted Jun 25, 2009 7:55amby Robin Setto

Dear Tim, Angelique, Ali and Bella,Smiles to all of you, with all of the wonderful blessings surrounding your family. "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away." Our intense prayers continue.-Michael and Robin SettoPosted Jun 25, 2009 7:06amby Marie Bresnahan

I too am visualizing those sores healed by next week.

I'm also inspired by your story and am reminded that the power or prayer works! Yeah!

Your belief in God is inspiring. Continue to set your intent of good health and wellness and it will be so. Banish the doubt and we'll all stand by and support you with whatever else you need. I am grateful, too. Your strength is hope. There is hope and keep sharing. We believe in you all! (BTW, I'm visualizing those sores healed by next week just like you are. Enough of us do it it will be so!) Bella is whole, perfect and complete. LT :-)Posted Jun 25, 2009 1:25amby Conde Rogers

Love the miracles you're creating. You are all my heroes. Thank you for continuing to include me in your life. I am creating miracles and healing with you every day. Love, CondePosted Jun 25, 2009 12:40amby Barbara Reuer

A Little About Bella And EB...

Anabella Ringgold was born on May 27, 2009 with a rare skin disease called Epidermolysis Bullosa, or EB. She had the rarest form, called Recessive Dystrophic, or RDEB for short. A single gene in her body responsible for making the anchor that hold her skin to her body was defective. This caused blisters and wounds to occur all over her body, including her mouth and entire GI tract. Any kind of friction, rubbing, bumping caused blisters to form, or it caused her skin to shear clean off. Life expectancy is under 20 years due to risk of malnutrition, infection, or squamous cell carcinoma. Although pain and discomfort was constant, Bella remained bright and cheerful, bless her heart. Though currently there is no cure for EB, Bella took place in a clinical trial at the U. of Minnesota where through Bone Marrow Transplantation, she grew her sister's skin on her body over time. Unfortunately, she died from complications of transplant on October 11, 2010. This is her story, and our story of how we cope as a family with the journey we are on together.